The following stories have been shared by those living with endometriosis, for the benefit of everyone in the endometriosis community. You can read all of these personal stories online here (each story has its own page) or save the print-ready .pdf format. You will need Acrobat Reader 5.0 or better to be able to read them. Feel free to print copies for your personal use, and please respect copyright; kindly seek permission before publishing elsewhere.Personal stories sharing experiences and practical hints can be of immense help to others. Please consider sharing your own valuable endometriosis experiences. You may choose to share just one brief aspect (eg Mirena IUD) and your story can be anonymous. If you are interested in writing your own story, please Contact us.

Fiona's Story (Hamilton, December 2012)

I'm in my mid-30's and have suffered period pain for 20 years; although it wasn't until 2-and-a- half years ago that a medical professional suggested endometriosis, and this was confirmed via laparoscopy as 'extensive' and on several organs. Having a mother, sister, aunty, cousin, and two best friends with similar symptoms, I - well, we all - normalised our pain. It wasn’t really something that was talked about much, and so I didn’t realise having to use tampons and pads wasn’t normal! The symptoms included 5-7 heavy days with severe abdominal pain for 3-4 days, lower back pain, headaches, nausea and mid-cycle pain. In my early 20's my manager told me that if she didn't need to take time off work once a month, then neither did I. It would get so bad sometimes I'd lie in the foetal position in my office with my receptionist fielding calls. I used to take A LOT of painkillers, much more than the recommended dosage, every month; so much so that I built a tolerance to them, and had to keep taking more and more just to take the edge off the pain. I ended up with a stomach ulcer when I was 23. Even then the specialists didn't connect the dots. Three years ago I was diagnosed with Fibromyalgia and Myalgic Encephalomyelitis (ME) aka Chronic Fatigue Syndrome. Then the endometriosis diagnosis brought news of sub-fertility and almost certainly IVF, and that I "should get pregnant very soon"! You've all heard this! For me personally the only positive long-term aspect of the surgery is that I now have a Mirena IUD, which means I don’t menstruate. I still get the monthly associated pain however, but not as severe. For years my constant need to pass water has been a running joke with friends, but after having endometrial cells removed from my bladder I didn’t pass water as frequently…. well for five whole months post-surgery! They also discovered cells latched onto my lower intestines pulling them out of place. After surgery the organs had to get used to being in this new (correct) position – which caused pain as everything adjusted. It also means the diagnosis of Irritable Bowel Syndrome (IBS) some 15 years ago was incorrect. I haven’t had any major digestive issues since surgery. I assume because of ME, surgery recovery was longer than most, with considerable pain for 10 months and I still have daily abdominal discomfort. During a recent pelvic scan, the radiologist told me this pain will not only be the endometrial cells growing back, but also scar tissue that forms naturally as a result of incisions. She also said it was most likely on my pelvic bone pulling and restricting movement; hence why I experience pain walking etc. My GP has referred me to the gynaecologist to discuss more surgery, though we’re in two minds about it since it caused me increased pain. Having researched it, it seems that if morphine is administered prior to surgery to relax the body, pain and recovery time has lessened for other ME patients. I’ve advised two people who’ve also gone on to have surgery and discover endometriosis, since my diagnosis, and from other people we’ve spoken to it seems it’s quite common for the cells to grow back within 6 months not the 4-5 years that some specialists say. The only course of action is surgery, but this surgery has proved disadvantageous and not a cure. Therefore over the past nine months I have been researching alternatives. It’s hard dealing with two chronic illnesses, though I’ve freed myself from depression and am working on reducing pain and fatigue through meditation, yoga, rest, and a vegetarian diet. I’m now a firm believer in the need to balance body, mind and spirit; and I am seeing positive changes in my energy levels, peace of mind, and to a lesser extent the pain. I’m inspired to find a natural way to heal the body, so that I can in turn provide tools to help others suffering from chronic illnesses. So watch this space! :)